After his ALS diagnosis in 2021, Marc Waddell felt alone. Today, he has a loving wife and leans on other supports like ALS Northwest as he navigates this disease.
Marc Waddell is from a small town in the Teton Valley of Idaho. When he first started experiencing some unusual symptoms, he thought it was a pinched nerve – but several spinal taps and EMGs ultimately confirmed it was ALS. “I was hoping it wouldn’t be ALS,” Marc expressed. “But I was almost relieved when I finally got the diagnosis.”
After receiving the news, Marc moved to Myrtle Creek, Oregon so he could stay in a small town while having closer access to medical care through the VA clinic in Roseburg, Oregon. He’s a military veteran who served in the Army Infantry. Veterans are up to twice as likely to be diagnosed with ALS.
“The hardest part was being on my own,” Marc shared. He has a dedicated network of family and friends ready to support him, but they are scattered across the country – so he felt like he had to face this diagnosis alone.
That’s when ALS Northwest stepped in.
Regional Care Services Coordinator Mary Rebar was Marc’s first contact with ALS Northwest. “I didn’t know where to turn or what to do,” Marc shared. “Mary really helped me out. She walked me through what resources are available to me.”
In addition to his local VA clinic, Marc also attends the multidisciplinary ALS clinic at the Portland VA on a quarterly basis. He sees up to eight specialists in one visit, preserving time and resources while maximizing his quality of life through enhanced provider collaboration.
Post-Diagnosis Romance
After moving to Oregon, Marc not only gained access to healthcare at the VA and support services through ALS Northwest – he met his now-wife, Sunshine. “I thought I’d never meet another woman again after my diagnosis,” Marc said. “But Sunshine just accepted it.”
Seeing them together, their love is apparent. Sunshine looked at Marc with deep admiration as she shared, “He’s the bravest man I’ve ever met. It’s not just about ALS.”
They dated, got married, and have a house together. “It’s wild how good our life is on the other side of ALS,” Sunshine expressed. Together, they have two cats (Kitten and Rain) and a dog (Floki). Sunshine also has two daughters and a granddaughter, and Marc is their stepdad.
Skiing, Independence, and Community
Marc has always loved the outdoors. He was a ski patroller for 14 years, working his way up to Assistant Patrol Director at Grand Targhee Resort in Wyoming – just across the border from the ranch he used to live on in Driggs, Idaho. “Everyone always said that nobody skied like Marc,” Sunshine said lovingly. “Everyone has good things to say about him.”
As the disease progressed, Marc lost a lot of weight. He even had a surgery in October that led to a further loss in mobility. But he continues to demonstrate resilience. “He always bounces back,” Sunshine said. “He works really hard not to lose his independence.”
As an independent person, Marc recognizes that asking for help is not easy. He said, “I’m a strong guy and didn’t want to ask for help. But I had to get over that – and my life is much better off.”
Community is an important piece of a good life for Marc and Sunshine. Their family and friends are just a phone call away, and they reach out to ALS Northwest for additional support. “Mary [at ALS Northwest] provides encouragement and is just somebody to talk to,” Marc shared. “ALS Northwest is amazing,” Sunshine added. “If not for this organization, so many people would be confused and disoriented. Having this support is the biggest comfort.”
Marc and Sunshine even attended the Portland ALS Family Fun Day at the Oregon Museum of Science and Industry (OMSI) for the first time in September. They got to meet and bond with others living with ALS. “We had a great time!” Sunshine said.
Living with ALS
Marc still loves the small town life, reflective of his roots growing up in Idaho. He likes to ride the tractor, and he and Sunshine plan to get a few chickens and a cow for their land in Myrtle Creek. In the future, he’s considering giving back by volunteering for the American Legion, a military service organization which supports veterans through various community projects.
After living with ALS for several years, Marc and Sunshine both have words of wisdom for others facing this disease.
“Don’t give up,” Marc said. “The biggest thing for me has been to keep a positive outlook. Be proactive to get what you need… if you need help, reach out. Help is out there.”
“Positive thoughts create positive outcomes,” Sunshine added. “Advocate for yourself – if you don’t ask, you won’t get. Either get busy living or get busy dying.”